Freedom From Fear

Rethinking How We Diagnose and Treat Breast Cancer

SOURCE: iStockphotoThe number of women diagnosed with breast cancer rose dramatically in the 20th century, increasing fear of breast cancer and leading more and more women to choose prophylactic mastectomies. But much of this increase represents overdiagnosis. Americans must recognize the overselling of cancer fear, and must question current practices that are based on the often-illusory goal of reasserting some control over fear.

Fear of dying from breast cancer is spurring more and more women to undergo the most radical of surgical options: bilateral mastectomy. New research finds that the number of women diagnosed with cancer in one breast who had bilateral mastectomies soared from 1.8 percent in 1998 to 4.5 percent in 2003.[1] That’s an increase of 150 percent in just five years. At this rate, bilateral mastectomy might someday become the norm for women diagnosed with breast cancer.

And that’s troubling.

Read an excerpt from Dr. Aronowitz’s recent book, Unnatural History: Breast Cancer and American Society, where he presents breast cancer as a disease that has entered the bodies of so many American women and the concerns of nearly all the rest, mostly as a result of how we have detected, labeled, and responded to the disease.

In other words, we’ve changed what we call cancer by catching it “earlier” and at a more ambiguous stage.

Neither improvements in surgery nor new biomedical insights seem to be driving such rapid change. Many women, it seems, are becoming increasingly fatalistic about getting and ultimately dying from breast cancer. They are, as one woman put it, “waiting for the axe to fall.” Some patients say that they simply want “to be done with it”—no more mammograms or biopsies. They want certainty and freedom from fear.

Looked at one way, women today should fear breast cancer no more than their mothers did. Breast cancer mortality (when adjusted for the aging of the population) remained constant from the time accurate statistics were kept in 1930 until about 1990, when it began to fall.

But women have other reasons to fear breast cancer. The 1:8 lifetime odds of developing breast cancer are widely touted and frightening, and confirm many women’s sense that breast cancer is everywhere.

What many people don’t necessarily know is that those odds reflect not only the incidence of destined-to-harm breast cancer but also “pre-cancerous” tumors that may or may not develop into metastatic disease. In other words, we’ve changed what we call cancer by catching it “earlier” and at a more ambiguous stage.

The two most prominent pre-cancer diagnoses are lobular carcinoma in situ (LCIS) and ductal carcinoma in situ (DCIS). The number of these diagnoses increased an astounding eightfold between 1975 and 2002. Diagnoses of invasive breast cancer rose during this period as well. Widespread use of screening mammography has played a substantial role in both these increases.

But a good deal of the disease increase we’re seeing probably reflects overdiagnosis. Many of these women might have been better off if they had not had screening and been subjected to the subsequent trauma of fear, uncertainty, and unnecessary biopsies and treatments. We desperately need better ways of distinguishing these women from those who will be helped by treatment.

This problem is most often understood and experienced as an individual treatment dilemma when a woman is diagnosed with breast cancer, especially LCIS or DCIS. But at the population level, the massive increase in breast cancer diagnoses, trumpeted in cancer education and awareness programs, has radically transformed how we perceive and react to this disease.

We need to come out and say that fear of breast cancer has too often been oversold.

Similar feelings of fear drove demand for the now discredited radical mastectomy, originally dubbed the “complete operation” and meant to end the need for repeat surgery that followed “incomplete,” less radical operations. A generation of patient advocates and skeptical physicians ultimately won the battle against routine use of this mutilating surgery, arguing that less extensive surgery had similar results, completeness was an illusion, fear of cancer had led to overreaction, and that the harm to women had been minimized.

It is disturbing, in light of that achievement, that we now seem to be moving backward, to an environment ruled by fear.

More accurate information on breast cancer and screening and treatment effectiveness would help, as would better shared decision-making between women and their doctors. But my sense is that the “cancer fear” problem and the troubling implications of our new breast cancer risk world won’t be solved at the individual level, especially at the point of extreme vulnerability when patients and their doctors confront a new diagnosis of cancer. As a physician, I would not second-guess anyone who carefully considered her options and decided to remove both breasts to extinguish the chance of breast cancer recurring.

But we need to examine and reassert more critical control over the many medical and societal level forces that have increased our fear of breast cancer and made the future for “women at risk” seem so troubling. We need to fall back from fear-promoting awareness campaigns that rely on scary and misleading risk statistics and exaggerate the benefits of screening and prevention options, especially mammography for younger women and pills to reduce breast cancer risk. We may need a more sophisticated educational campaign that emphasizes that breast cancer is more treatable than ever and that accurately explains the nuances of risk.

We need to come out and say that fear of breast cancer has too often been oversold. Acknowledging this might lead all of us—as a society and as individuals—to respond to breast cancer in different, more thoughtful ways.

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Fear of dying from breast cancer is spurring more and more women to undergo the most radical of surgical options: bilateral mastectomy. New research finds that the number of women diagnosed with cancer in one breast who had bilateral mastectomies soared from 1.8 percent in 1998 to 4.5 percent in 2003.[1] That's an increase of 150 percent in just five years. At this rate, bilateral mastectomy might someday become the norm for women diagnosed with breast cancer.
And that's troubling.

Read an excerpt from Dr. Aronowitz’s recent book, Unnatural History: Breast Cancer and American Society, where he presents breast cancer as a disease that has entered the bodies of so many American women and the concerns of nearly all the rest, mostly as a result of how we have detected, labeled, and responded to the disease.

In other words, we’ve changed what we call cancer by catching it “earlier” and at a more ambiguous stage.

Neither improvements in surgery nor new biomedical insights seem to be driving such rapid change. Many women, it seems, are becoming increasingly fatalistic about getting and ultimately dying from breast cancer. They are, as one woman put it, "waiting for the axe to fall." Some patients say that they simply want "to be done with it"—no more mammograms or biopsies. They want certainty and freedom from fear.
Looked at one way, women today should fear breast cancer no more than their mothers did. Breast cancer mortality (when adjusted for the aging of the population) remained constant from the time accurate statistics were kept in 1930 until about 1990, when it began to fall.
But women have other reasons to fear breast cancer. The 1:8 lifetime odds of developing breast cancer are widely touted and frightening, and confirm many women's sense that breast cancer is everywhere.
What many people don't necessarily know is that those odds reflect not only the incidence of destined-to-harm breast cancer but also “pre-cancerous” tumors that may or may not develop into metastatic disease. In other words, we've changed what we call cancer by catching it "earlier" and at a more ambiguous stage.
The two most prominent pre-cancer diagnoses are lobular carcinoma in situ (LCIS) and ductal carcinoma in situ (DCIS). The number of these diagnoses increased an astounding eightfold between 1975 and 2002. Diagnoses of invasive breast cancer rose during this period as well. Widespread use of screening mammography has played a substantial role in both these increases.
But a good deal of the disease increase we're seeing probably reflects overdiagnosis. Many of these women might have been better off if they had not had screening and been subjected to the subsequent trauma of fear, uncertainty, and unnecessary biopsies and treatments. We desperately need better ways of distinguishing these women from those who will be helped by treatment.
This problem is most often understood and experienced as an individual treatment dilemma when a woman is diagnosed with breast cancer, especially LCIS or DCIS. But at the population level, the massive increase in breast cancer diagnoses, trumpeted in cancer education and awareness programs, has radically transformed how we perceive and react to this disease.

We need to come out and say that fear of breast cancer has too often been oversold.

Similar feelings of fear drove demand for the now discredited radical mastectomy, originally dubbed the "complete operation" and meant to end the need for repeat surgery that followed "incomplete," less radical operations. A generation of patient advocates and skeptical physicians ultimately won the battle against routine use of this mutilating surgery, arguing that less extensive surgery had similar results, completeness was an illusion, fear of cancer had led to overreaction, and that the harm to women had been minimized.
It is disturbing, in light of that achievement, that we now seem to be moving backward, to an environment ruled by fear.
More accurate information on breast cancer and screening and treatment effectiveness would help, as would better shared decision-making between women and their doctors. But my sense is that the "cancer fear" problem and the troubling implications of our new breast cancer risk world won't be solved at the individual level, especially at the point of extreme vulnerability when patients and their doctors confront a new diagnosis of cancer. As a physician, I would not second-guess anyone who carefully considered her options and decided to remove both breasts to extinguish the chance of breast cancer recurring.
But we need to examine and reassert more critical control over the many medical and societal level forces that have increased our fear of breast cancer and made the future for "women at risk" seem so troubling. We need to fall back from fear-promoting awareness campaigns that rely on scary and misleading risk statistics and exaggerate the benefits of screening and prevention options, especially mammography for younger women and pills to reduce breast cancer risk. We may need a more sophisticated educational campaign that emphasizes that breast cancer is more treatable than ever and that accurately explains the nuances of risk.
We need to come out and say that fear of breast cancer has too often been oversold. Acknowledging this might lead all of us—as a society and as individuals—to respond to breast cancer in different, more thoughtful ways.
Robert A. Aronowitz, M.D., is an associate professor in the History and Sociology of Science Department and Family Medicine and Community Health at the University of Pennsylvania. He is also the author of the new book Unnatural History: Breast Cancer and American Society (Cambridge University Press). Notes
1) T. M. Tuttle, E. B. Habermann, E. H. Grund, T. J. Morris, and B. A. Virnig, “Increasing Use of Contralateral Prophylactic Mastectomy for Breast Cancer Patients: A Trend Toward More Aggressive Surgical Treatment.” Journal of Clinical Oncology (published online, October 22, 2007).

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